Avery’s Bucket List

This was week three of Avery’s Bucket List: a bittersweet chronicle of an SMA baby and her life experiences, which her parents packed in as quickly as possible. Her story went viral, and fast. Avery was diagnosed with Spinal Muscular Atrophy last month at 5 months old. They started her blog a few days later, and had 30,000 hits within three days.

Her family was given the realistic prognosis that she may only be with us another eighteen months, possibly less (at least 50% of SMA type 1’s pass away before their second birthday). But rather than grieve privately or otherwise withdraw, they decided to celebrate Avery’s life while she’s here, give her the fullest life possible, and use social media to share their reality and raise awareness of SMA. Her parents started a blog and listed all the fun events and milestones they wanted for their child. They called it her bucket list–a charming yet pretty horrible concept for most of us to consider.

Word spread, and fast! Crossed off of her bucket list: throwing out the first pitch, being kissed by a boy, going to a water park, flying a kite. The blog really caught on. Subscribers checked each day to see photos of what new fun things Avery could check off her bucket list. CNN and ABC ran stories on her. Avery and her family had little time left together, but they did their damnedest to raise an incredible amount of awareness–and money for research–in an extremely short period of time. Their blog hits crested a million. Then two million.

Avery passed away last Monday, April 30 2012. After a healthy weekend and no hint of what was to come, her lung collapsed at home and she died at the hospital a few hours later. It happens. That fast. I wish I could say that I can’t imagine how her parents are dealing with this, but I can. I haven’t had to, yet, but SMA parents are constantly preparing themselves for the worst.

Avery isn’t the first. Avery isn’t the last. Avery’s parents knew this, and found the courage and time to let us peek into her life in ways which resonated with everyone–especially among people who didn’t know what SMA is. And those folks didn’t leave Avery’s blog and shut down their computers–they donated money. Less than 48 hours after Avery’s passing saw a jaw-dropping $130,000 USD in donations targeted for an incredibly promising gene therapy clinical trial. The SMA community is buzzing with excitement about this. I am optimistic, but my heart remains heavy. This trial will target the youngest SMA patients, and as this trial has not yet begun, it’s likely that the babies who will eventually be part of this trial aren’t even born yet. Today, they rest comfortably in their mothers’ wombs and their families have no idea how they are about to be tested.

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Comments

I can’t even wrap my brain around the tragedy this family must feel. Cassie, what a wonderful interview you gave. Praying for you guys and everyone affected by SMA. I prayed that one day there will be a cure.